Family Engagement

Research Project Looking for Adults Over 65 with Schizophrenia and Their Caregivers

Researchers from Ontario and Manitoba are studying the care received by people with schizophrenia in the last year of life with the goal of improving end-of-life care for this vulnerable population.  They are especially interested in hearing from people who have experience with end-of-life care, people who have lived experience with schizophrenia or caregivers who are caring for someone with schizophrenia.  Participants will be invited to join the project’s Patient and Family Advisory Committee that will provide guidance for the project. Learn More

We are Not Visitors: Working Together with Family Caregivers and Care Partners

Family Caregivers are critical to positive and safe patient outcomes.  This guide “Not Just A Visitor” is comprised of components and strategies for an effective co-design model of care, written by family experience experts from around the world and being adopted by leading health professionals. Learn More

How To Develop More Meaningful Engagement with Caregiver Advisors 

Please share this infographic and help us spotlight the new website spearheaded by Cynthia Clark and her team at the University of Ottawa’s Institute of Mental Health Research at The Royal that features many helpful resources for mental health and addiction organizations to improve their collaboration with family caregiver advisors. Take a quiz, view some videos and learn how to meaningfully engage caregiver advisors using valuable templates and tools.

Cynthia Clark, Principal Investigator, and Alexis Dorland, Research Coordinator, share their insights about their research and the creation of the various knowledge products featured at

New Website:  Working with Family Caregivers in Mental Health and Substance Use Disorder Organizations

Acquire a better understanding of how to build and maintain meaningful collaborative partnerships between healthcare providers and caregivers advisors from knowledge products on a new website created by a team of caregiver advisors, service providers and researchers at the University of Ottawa’s Institute of Mental Health Research at The Royal. Visit Website

How well are you meaningfully engaging with caregiver advisors in your organization? Take an interactive quiz here

The Waiting Room Revolution: Julie Drury and Maggie Keresteci Speak Out

Listen to two podcasts with Patient and Caregiver Advocates Julie Drury and Maggie Keresteci as they speak about their experiences in Ontario’s health care system.  Caregivers play a key role in connecting the dots in the care of their loved ones and it’s their wish that caregivers are seen as an essential part of the clinical team.  In part 2 discover the changes that Julie and Maggie think are necessary in the health care system and why they are hopeful for the future of patient and family-centred care. Click to Listen: Part 1 and Part 2

Guidelines for Partnering with People with Lived and Living Experience of Substance Use and Their Families and Friends

People with lived and living experience of substance use are experts and it is essential to include them in research and in the planning of services that will affect them.  Find out what organizations and service providers can do to engage with people with lived experience and their families and friends in this document published by The Canadian Centre on Substance Use and Addiction (CCSA). Learn More

Mental Health Commission of Canada 

Engaging Caregivers in Mental Health and Addiction Services in Canada: Promising Practices Guide

  • summarizes the existing literature on what works to meaningfully engage caregivers across the continuum of health service delivery
  • highlights promising practices and potential barriers to implementation
  • informs stakeholders about any gaps in evidence
  • promotes the organizational or local community mapping of untapped or existing caregiver resources
  • profiles promising Canadian programs, services, and policy initiatives that promote caregiver engagement at the organizational level
  • supports mental health and addiction organizations’ efforts to promote the value of engaging caregivers and to improve caregivers’ experience with MHAs and the care of their loved ones.
    Read the Guide

Families Matter: A Framework for Family Mental Health in British Columbia

Framework at a Glance:

1. Assist policy makers and service providers to understand the mental health needs of families experiencing mental health challenges, and to work with families to meet these needs;

2. Advocate for a collaborative, systemic approach to supporting families experiencing mental health challenges across all BC’s service systems;

3. Promote a shift in thinking and doing that acknowledges the profound relationship between families and mental health and prioritizes whole family approaches to research, policy and practice;

4. Enable families experiencing mental health challenges to improve their mental health by strengthening resilience and coping capacity.

The FORCE believes this approach will help to improve family mental health, prevent or minimize family mental health challenges, and reduce the impacts of mental illness on all family members.
Click Here to review the entire Framework.

 Moving Forward Together

A Multi-Stakeholder Dialogue on Meeting the needs of Family Caregivers of People Living with Mental Health and Addiction Problems or Illnesses.
Read the Document Here

Measurement & Evaluation: Case Studies & Key Insights

Learn about five case studies of co-designed change initiatives: report. Read More

Lessons from Changing Care: Sustainability and Spread of Change Initiatives

View practical tips that the Changing CARE projects learned along their journey of co-designing change: report. Read More

Engagement & Co-design Inventory of Resources

Co-design and engagement are key ingredients to advancing meaningful change.  This inventory is designed to support individuals and organizations as they build their capacity for engagement and co-design.
Read More

Patient and Family Engagement in Primary Care

Building effective patient and family advisory
councils in three Ontario communities

The Change Foundation Case Study Primary Care

PCORI – The Value of Engagement

In PCORI-funded research, patients and other healthcare stakeholders are equitable partners—as opposed to research subjects—who leverage their lived experience and expertise to influence research to be more patient centered, relevant, and useful. Their early and continued involvement throughout a study can lead to greater use and uptake of research results by patients and stakeholders within the healthcare community.
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Patient Experience Journal, Volume 6, Issue 1 2019

Twelve principles to support caregiver engagement
in health care systems and health research

Family and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders from research, policy and practice and lived experience (caregivers) to share perspectives on caregiver engagement and co-design.
Read More

Using collaboration to take on complex community health issues and create social change

Working with a CAMH librarian, we explored the following academic databases: Pub Med; PsychINFO; scholar’s portal; Cochrane Systematic Reviews; and Google Scholar. We looked for articles published between 2007 and 2017. Key search terms included “community collaboration,” “inter-agency collaboration,” “inter-organizational collaboration,” “systems change,” and “systems transformation.” We gave priority to systematic reviews as well as well-known and respected articles on the subject, as indicated by the number of times cited.
Rapid Review_Collaboration

The Alzheimer Society is Canada

A Guide for Implementing Person and Family-Centred Care Education across Health Care Organizations

In this toolkit, we have documented our planning, implementation and evaluation experiences and lessons learned to assist other health care organizations to implement and sustain PFCC initiatives and support a shift towards a more person and family centred approach to care.
Click here to review the document.

Mental Health Commission of Canada

Government Engagement ToolKit

This toolkit is intended to support individuals, groups, or organizations in their efforts to secure government support in developing and delivering mental health services. Even if there is an awareness of the potential benefits of engaging governments, making the connections necessary to successfully secure government support can be a daunting task. This kit provides the strategies, guides, and tools that can be used to ensure that groups are best equipped in this endeavour.

Individuals familiar with the resources herein will be better prepared to connect with the most appropriate government leaders, policy-makers, and support staff and communicate most effectively in terms that will provide the best arguments for governments to support their proposals.
Click Here to review the PDF Toolkit.

The Change Foundation Toolkit

A toolkit designed to help organizations use co-design to improve the caregiver experience.  This toolkit includes tools, resources, reports and learnings which are updated on a regular basis.
To review the toolkit click here

Quality Standard for Youth Engagement

Youth engagement can occur along a continuum and across three levels.28
Youth engagement at the level of personal care and health decisions is focused on the relationship between youth and healthcare professionals and improving health outcomes for children, youth and families. Engagement within an organization is focused on improving programs and services or improving organizational policies and governance. Engagement at the system level is focused on improvements beyond a single organization.

Centre of Excellence of Partnership with Patients and Public

A helpful resource for evidence-based engagement practices to assist stakeholders to better understand the key conditions for success needed for such engagement initiatives involving patient and families.
Click Here

Institute for Patient and Family Centred Care

A Checklist for Attitudes About Patients and Families as Advisers Medical